Rejecting hormone therapy
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roz27, how big was cancer that was removed, what grade, and what Oncotype? I was diagnosed with ILC myself and I'm 10 years younger than you. Like you, I also had a healthy and young body and mind but I am taking the medication because I am scared of cancer coming back.
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appreciate all the food for thought on this thread. I just had another mastectomy for IDC with neuroendocrine features. Previously I had a lumpectomy with rads, then a mastectomy with some Aromasin and Exemestane that I had to stop for side effects and bone loss. I later had a stress fracture in my femur, perhaps from the alendrondrate used to treat the bone loss.
In between mastectomies I had a complete hysterectomy for early stage uterine cancer. new MO wants me to take tamoxifen. I am super concerned as this was unexpected and I’m not sure it’s a safe choice, I will discuss this at our next meeting when I also will get my oncotype score. Anyone else take tamoxifen after having uterine cancer?
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I saw this and your new thread and I hope you can find folks with specific experience, but I just wanted to say to never be afraid to get a second opinion. Even if your first doctor is 100% correct, sometimes having two people explain things each in their own way can make all the difference. And hopefully your doctor is 100% correct, but they are only human too.
If it's the same one then they are not a specialist, and they should be consulting with specialists. My breast cancer oncologist consulted with a gynecological oncologist when I pushed her on my birth control questions - a good doctor will want to use the best resources available to them.
If it's different ones and this one is a breast cancer specialist, then they too should be in consultation with whoever treated you for the uterine cancer.
As far as I know, there is more medical data on tamoxifen than on pretty much any other breast cancer hormonal treatment. It's one of the oldest out there with decades of studies and clinical experience - more than the AIs you were on before.
Based on all that data, your doctors may have good reason to believe that it's safe and effective for you. If so, they should be able to share it with you in a way that helps you have confidence as well. Just know though, some truly great doctors are not always the greatest communicators/educators, and if you think you have one of those, it could be well worth it to do the extra work to find another practitioner who can help. That person might be a second opinion doctor, but it could also be a resident or a nurse practitioner or a social worker within that same doctor's care center.
Good luck!
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At 44 years old in 2008 I was dx stage 1 node negative IDC, clear margins from lumpectomy + rads, oncotype of 23 and 6 months of CMF chemo. PLUS 7 years of femara. I was told the treatment and 7 years femara gave me a recurrence % of around 8%.
I was taken off of femara (after 7 years which was longer than the standard of care) as my top rated NCI cancer ctr told me my risk of bone loss was greater than my risk of recurrence. I have no family history and do not have BRCA.
Imagine my surprise when 11 years later, I had a recurrence, stage IV. It was discovered fairly early but there is no early stage IV distinction, really. I have been on treatment for 3.5 years and have had no evidence of disease for almost 3 of those years so I am doing well. I have been told by many oncologists that this should not have happened, but here I am.
Stage IV, even when you are doing well on treatment is a terrible reality.
My reality and my opinion is the oncologists don't really know everything and I do believe 30% of early stage will have a recurrence and not a local recurrence. I did all I could to reduce my risk and still ended up stage IV. Plenty of people have reasons to not take an Aromatase Inhibitor but I would caution you all to seek a second opinion. I sure wish I had stayed on femara past 10 years but didn't seek a second opinion because with node negative disease and the treatment I completed, I felt like 7 years of femara was plenty as I had remained cancer free.
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aprilgirl1 -
You're right. You did everything you could and unfortunately it recurred. Even if you had stayed on the Femara longer, it still may have happened.
I was on Femara with my 1st dx for 8 years. After 19 years, I had a new primary. Although I was fortunate it was a new primary, it was more aggressive than my 1st time. I said to my MO, "Maybe I never should have stopped the Femara." She said then it might have shown up as triple negative.
Unfortunately, there is STILL so much unknown about bc and I think a lot of it is that there are too many variables. When I hear things like "Walk for the cure", I always wonder….Cure for which type of bc?
Sorry about your mets, but good that you are NED and know that you did all you could and likely nothing else that you did would have changed things.
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I finished up my radiation a few weeks back and my onco wanted me to get an injection for ovarian suppression and start on Verzenio. I have been struggling with the idea of hormonal therapy after seeing the side effects and I definitely feel QOL is important but I don't want to become metastatic either. I decided to go with Tamoxifen and have been on it for a couple of weeks. It hasn't been too bad but the hot flashes are not fun. I started on Verzenio and I am already feeling nauseated after day 2. I had a pcr to chemo and my onco said she would be ok if I want to skip the V which I'm feeling like I might do.
I looked into fermented wheat germ extract as an alternative which seemed like some promising benefits that NIH documented, but it also looked like there are some estrogen effects which doesn't sound like it would be good if your tumor is hormone positive. I do often wonder if the damage is already done and am I just making myself miserable until the next time. I agree this is all a crapshoot and you just don't know what will happen.0 -
It has been since Jun 22 or so that I went off of the AI, and basically all medicines, to focus on feeling better and quality of life. All of the side effects of the AI went away, plus the side effects of the cancer treatments. I am doing a strict diet and lifestyle regimen, and have stopped second guessing my decision to stop anti-estrogen treatments back then. I think it is MOST important to get as much medical information and statistics as you can, talk to your family, and make your OWN decision. I was a wicked witch emotionally on the AI, and in pain daily, so I decided (with my family's help) that coming off was best for me. Of course, the future is unknown, and time will tell.
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hello @threetree . I’m very sorry for your new diagnosis. You’re not the first one taking Al and get
I took anastrozole+verzenio for 13 months and now just diagnosed stage 4 with bone Mets multifocal.
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Fighter00 - Can't believe I saw your post here. This thread isn't very active and my post must have been about a year ago. I'll never know for sure of course just why I went metastatic, but I was considered "locally advanced" at diagnosis and I understand that usually means you will become metastatic one way or another. They were real slow getting me into some stage 4 drugs (post Covid slow down?) and I finally complained. By late April and into May I started with Faslodex (another anti estrogen drug) and Verzenio and have been stable so far - knock on wood.
There are a lot of stage 4 drugs out there and many seem to do well for quite some time, so there is definitely reason for hope and giving it your best shot. From what I'm aware of, none of these stage 4 drugs are easy, but there are some modest things that can help a bit and some work arounds, so again lots of reasons to go for it with these treatments. I'm just so sorry that this has to you and I wish you nothing but all the luck in the world!
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@threetree Thank you. Mine in 2022 was locally advanced but I don’t really it should metatased so fast. Tell me how are you doing??
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Hi. New to this site and hoping this is the right place to start. I was dx with breast cancer Nov 24. Had lumpectomy in Dec. Dr said I am lucky. Have "well behaved" cancer. Invasive ductal carcinoma, Grade 1, TlB. My biopsy results show no involvement of the lymph nodes and no spread to the margins. So, supposedly clean. Am completing 3-1/2 weeks of radiation and now am considering hormone therapy. I don't need chemo, but they are recommending I consider Tamoxifen or an AI since my cancer tested for Estrogen Positive. After reading and listening to some of the comments here and elsewhere I am seriously considering taking a pass on the therapy. I am 70 years old and don't want to spend 5 years on drugs with some of the side effects and health issues they can potentially cause. Call me crazy but I think I am better off taking my chances with a reoccurrence. The odds of which are lower than the odds of serious side effects from AI's. Would appreciate some comments/thoughts from those of you who have experience to share. I know I can start them and then see what happens, at least that is the Dr's POV. Thank you for your time and sharing.
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Hi little hennypenny,
I don't think you're crazy, and I would be surprised if your doctor thinks your crazy for considering it, especially given your age.
Some thoughts to add into the mix, though:
- Not everyone has side effects from the drugs. Some people have none at all, some people have minimal and bearable, and some people can get to none or minimal by trying different drugs and/or reduced doses. If you don't like how you feel on the meds, you can always stop and the risks of side effects that continue after stopping is quite low (iirc, check with your doctor).
- While odds of recurrence are low, it's important to think about the impact of recurrence and the decisions it would impose on you. This includes the mental and emotional stress of the diagnosis process, and then decisions about how/whether to treat that, as your body ages, the risk/benefit calculations can get harder.
- 70 means different things for different people. A lot of the best research on breast cancer is old because it follows people for a long time, and what 70 meant for the average women at the start of a long term study that began 35 years ago itself is likely different. What 70 means for five different 70 year old women today could be five different things. Some people are from families where women regularly live to 90+ with good quality of life, and excellent statistics at 5 and 10 years out won't mean the same to them as someone who is not optimistic about making it to 80.
- "So, supposedly clean" - this is not a thing. Invasive cancer by definition is able to leave the breast (whether it is a tiny stage 1 grade 1 IDC tumor or a large stage 3 grade 3 ILC situation), and it doesn't have to go through the lymph nodes either. That is the scary thing about it. We do not have the ability to know whether it has spread to other parts of the body until it gets large enough to be seen with our existing screening tools, and by then it is stage 4. All doctors can assert is that there is "no evidence of disease." What makes the hormonal meds amazing is that they have the ability (in some cases) to suppress escaped cancer (in addtion to helping prevent a new cancer). What makes them so frustrating is that we have no way of knowing (with current tech) whether our personal cancer has escaped and if so, whether it is vulnerable to the drugs we have.
Anyway I think ultimately it's a personal decision. If your oncologist isn't willing or isn't capable of having a supportive, personalized, and nuanced, discussion with you about this, absolutely look for a second opinion if feeling as informed as possible is important to you.
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I echo everything in salamandras post. There is absolutely no way to determine if surgery left things absolutely clean. Breast cancer cells can travel through the bloodstream undetected and we simply have no way of knowing if this will happen or who it will happen to.
When contemplating not doing hormonal therapy , the most important thing you don’t want is regrets. Take care
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did you doctors provide you with a recurrence risk with hormone suppressing drugs vs without them? Best to have all tests performed and data made available to you so you make as informed a decision as possible. I tried them for 3 months, and I couldn’t handle it (although many have far lesser or no issues). My recurrence risk based on oncotype and genetic testing per onc was 3% taking them vs 6% without so 5 years ago at 62 decided to play those odds. To my knowledge i’m sill doing ok but it’s really a crapshoot IMO.
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